Ryan's surgery done!

I thought again I followed up to say we are home and he is making progress. We are thankful that his tummy is accepting the formula most of the time. Thank you for continued prayers. I need to follow up with a few pictures!

Oh my! My poor guy is full of meds! We have created our little charts to give meds, order forms to keep track of when they've been ordered, and his own shelves in the fridge! We are looking at buying a small fridge to put in his room just for his meds,and feeding supplies. He's his own walking little pharmacy! What's sad is he's starting to be able to name each one of them, yes good for him. But sad for me, it is the reality of what is with having a special needs child.

This is just the morning routine for his meds. He gets afternoon and night time meds. Soon to add tube feeds to the routine.

Playing games

I love that Ryan still plays board games with me. We play Candy Land, UNO,War,Go Fish,Operation.

I never thought that he would ever beating Mom at games. We thrive on the competition. 

UNO is his favorite game,he likes to win that game. When his grandparents come for a visit he is in heaven they love to play all day long.

 I love playing UNO!

Swimming lessons for free!

Well today Ryan had swimming lessons. We only have 1 more to go. I found these lessons from "Little Mermaid school" They were free lessons. We got 8 free lessons,we only miss 1 week when he was sick.We need a house with a pool!!!!

Dubowitz Syndrome

Dubowitz syndrome is a rare genetic disorder characterized by microcephaly, growth retardation and a characteristic facial appearance (small, round, triangular shaped with a pointed, receding chin, a broad, wide-tipped nose, and wide-set eyes with drooping eyelids.) Symptoms vary among patients, but other characteristics include a soft, high pitched voice; partial webbing of fingers and toes; palate deformations; genital abnormalities; eczema; hyperactivity; preference for concrete thinking over abstract; language difficulties and aversion to crowds.^[1] The pathogenesis of the disease is yet to be identified and no medical tests can definitively diagnose the disease.^[2] The main method of diagnosis is through identification of facial phenotype. Since it was first described in 1965 by English physician Victor Dubowitz, over 140 cases have been reported worldwide. A majority of cases have been reported from the United States, Germany and Russia, and it appears to affect all ethnicities and genders equally.^[1]

^{Here is what a cute boy looks like with Dubowitz Syndrome!!! The most sweetest boy you will ever know!!!}

What a crazy day!!

The day started out just like any other day,very crazy. I got Ryan up at 8am then we proceed with his vest,breathing treatments. Then onto meds and breakfast. Well he had sausage biscuits and fruit. Very shortly after he ate he threw up all over the place,so we changed him got him dressed again. Then onto taking Dad his lunch that he requested . Onto doctor 1 appointment, then to pick up Amber,take her to her appointment.I got my TB test today have to have it read on Friday.We took Amber and "thing" home. I treated Ryan and Megan to Burger King for some lunch! Off to doctors appointment number 2. Home by 2:45 for the wheelchair guy to come and take Ryan's measurements for a new custom wheelchair.

 I have supper to do still, and all of Ryan's breathing and vest treatments and shower before he watches "Big Brother" on TV.

I didn't get all the things done in the day I needed so I must do more tomorrow.

Technology free times

I am trying to work on having no computer times. I want to lots more hands on crafts and fun with Ryan. BUT he isn't having any of it.
How do I get Ryan to have some times were we are having fun with out technology?
He is autistic and change isn't what he likes at all.
I like the pecs system, it teaches what comes next with cards. Maybe we can use this some how to get Ryan to change from the T.V and computer for some fun craft time.

This is what I see him doing most of the day! He is so CUTE!!!!!